Community, Hope, and Resilience: Parental Perspectives on Peer Support in Neonatology

Objectives To describe the perspective of parents who participated in peer-to-peer support meetings between parents of children in Neonatal Intensive Care Unit (NICU) and veteran resource parents with a previous NICU experience. Study design During a longitudinal evaluation in a tertiary care NICU, participating parents were asked to evaluate meetings; with open-ended questions, they were asked about their perspectives. Results were analyzed using mixed methods. Results 45 NICU-parents participated during a 10-week study period. They were longitudinally followed after attending at least one of 10 meetings offered; 95% (43/45) of parents answered the meeting was useful to them and gave an overall evaluation of 8.7/10 (average). For each meeting, all the subjects on the checklist of the moderators (veteran resource-parents) were discussed with new parents. When describing why and how the meetings were useful to them in their answers to open-ended questions, NICU-parents described three major themes: 1) decreasing isolation and being a community (73%), 2) hope and resilience (63%) and 3) getting practical “parent” information (32%). Sharing stories with parents who had also been through a loss, sadness and grief, NICU-parents trusted it was possible to adapt and thrive. The meetings normalized parental emotions (92%), decreased negative emotions (anger, sadness, guilt), empowered them in their parental role and helped parents communicate with loved ones and providers. Conclusion Peer-support meetings provide a unique and useful means to support parents. Future investigations will investigate if and how this type of intervention can improve clinical outcomes.